Thursday, May 18, 2017

A
friend of mine recently posted an interesting quote on Facebook. Now that’s certainly nothing to write home
(or write blog) about – every day we see dozens of quotes meant to make us
think introspectively for a second and then keep scrolling. Usually, we skip the introspection and just
scroll on. Occasionally we comment and
move on, but the point is that no matter what we do, we scroll past it and
don’t give it a second thought. I made a comment – half joking/half sarcastic, and scrolled
on, as we’re supposed to do. But this time, it stuck with me.

"You are the average of the five people you spend the most time with."~Ok, that's my husband, my mom, and probably 3 doctors.

Ha
ha ha … it’s funny ‘cause it’s true.

But
that’s precisely why it’s not so funny.

I
tried to think about it more, and come up with a real answer. Surely there are people I spend more time
with than my doctors … right? I mean … I
do see a lot of doctors, but there has to be more than that … doesn’t there?

When I couldn't think of anyone else I spend time with, I went to look at my calendar, hoping I'd find that I have a real life, with real friends and real activities.

Eh … not so much. It’s actually been a busier month than usual, though, so there was more than I expected:

Monday, May 1, 2017

It’s
Arthritis Awareness Month! This is a big month for me – not only does
this month focus on multiple conditions that I have, but it does so with the
support of multiple organizations that I volunteer with. So without further ado, let’s talk about
arthritis!

For
starters, the most important thing to be aware
of is that arthritis is an umbrella term that covers over 100 different
conditions. Yes, that includes your
grandmother’s bad hip – that’s osteoarthritis
(OA), a degenerative joint disease caused by wear-and-tear. But it also includes things like carpal
tunnel syndrome, gout, and rheumatoid
arthritis (RA). And
then there are my issues.

Back
in 2007, I started feeling like something was wrong, but I couldn’t quite
pinpoint what it was. My body ached
everywhere – a deep, immobilizing pain as if I’d just done an intense workout. I felt an indescribable fatigue that no
amount of sleep (or coffee) could defeat.
I had headaches and stomach aches daily, and often felt dizzy, nauseous,
and weak. In 2008 I was sent to
countless specialists for countless tests, but the doctors had no answers for
me. They suggested I was “just
depressed” or worse yet, making it up. After
two separate nurses (parents of clients, not actually treating me) suggested
that it sounded like fibromyalgia, I
began to do my own research. The more I
learned, the more I knew that those
two nurses were right. Still, the
doctors continued to dismiss me, to disregard my suffering and deny my pleas
for help. It took another four years before I was officially
diagnosed with fibromyalgia. Treatment
does reduce the symptoms a bit, but what meant more than anything was the
validation that what I was feeling was real.
That’s why Fibromyalgia
Awareness Day (May 12) is so important – it lets other people
suffering with this condition know that they are not alone.

As
bad as it is, I wish I could say that fibromyalgia was my only ailment. Sadly, it rarely acts alone; fibromyalgia
patients often have a number of overlapping
conditions. In 2011 I developed new symptoms: unbearable pain and
swelling in my feet and ankles, and rashes on my legs. Though these didn’t fit with what I was sure
was (still undiagnosed) fibromyalgia, they were visible, which meant the doctors could no longer say it was all in
my head. I was told it was “some kind of
arthritis,” that it was autoimmune/inflammatory, but the doctor didn’t know
exactly what type. Over time, it
progressed, so that my hands often swelled and nearly all joints became
painful. It took another four years of rotating misdiagnoses and failed treatments
before we finally figured out that the inflammatory
arthritis and other symptoms were part of a rare disease called sarcoidosis. Like with fibromyalgia, the confirmation of a
definitive answer after years of only questions was a huge relief. Also like with fibromyalgia, the treatment
helps to alleviate the symptoms somewhat, but I still have pain and fatigue
every day, and a bad flare can knock me out of commission for days or weeks at
a time.

Meet the Buttahfly

About Kerry

​I'm a glass-half-full kind of girl. More than that, really - I'm the girl who'll point out that if it's not full, you don't have to worry about spilling your drink every time you pick it up!

I am extremely fortunate to be married to my best friend - the boy next door I had a crush on since I was a child. Though we've been married nearly 17 years, people who meet us still think we’re newlyweds … and in a way, we still are! Through thick and thin, sickness and health, he has been my rock, my anchor, my greatest source of strength and support.

Over the past few years, I've been diagnosed with a number of chronic, autoimmune, and invisible illnesses (see What’s Wrong for the details). Still, I do the best I can to stay positive: this blog is my way of showing those with similar experiences that they are not alone. We may not be able to beat (cure) our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together.

It's my mission to make a difference in people's lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone ... and that someone could be you!

🎶We're Jinglin', Baby!

On December 9, I'll be jingling my bells at the Arthritis Foundation's Jingle Bell Run. Join us if you're in the area ... or support our efforts with a donation. Anything you can do would be greatly appreciated!

The Mighty

I've recently had a number of stories published on The Mighty, an online magazine of sorts for people with chronic illness. View my author page (and published pieces) here.

2017 WEGO Health Awards: Patient Leader Hero (Nominee)

“Sometimes the connections we make in online communities go above and beyond, truly changing our lives for the better.” This award recognizes those Patient Leaders “whose content has opened your eyes to seeing things differently … whose dedication has ignited the advocate within you to make a change … whose work has effected change for their community members. This Patient Leader's influence truly has the impact to make a difference. They're nothing short of a hero.” I am truly honored to be nominated.

I Did It!

Every day in April 2014, WEGO Health provided a prompt, and my posts here reflect my responses to those ideas, in terms of living with chronic illness(es). It was a great experience that inspired me to write more, enabled me to “meet” other bloggers and friends, and empowered us all to share our experiences in a unique and creative way.